PVNS Statistics Spoiler Alert, it's not 1 in 1.8 million

I cringe every time I hear the statistic "1 in 1.8 million people have it in the entire world".  Wrong!
When I first discovered this statistic I thought I was pretty special.  The likelihood of finding someone else with it would be minimal.  But within a month of being diagnosed with PVNS I met someone else with PVNS.  She lived in my city which has less than 1 million residents.  Then I learned over several years that many people have it in my city.  I started tracking cities populations and the amount of people I could locate who had it in those places and calculated it's closer to 1 in 250,000 and maybe even less than that.

I then started tracking where the statistic came from.  It was obviously regurgitated by people (mostly doctors) who simply googled the statistic.  No real research about where that statistic came from because I was able to track this statistic back to the 1980s.  And within a year I learned about at least 1000 new cases through support groups I am part of.  And those are just the cases I know of.

I heard of a doctor who treats patients in an African village and was quoted as saying "I see PVNS cases all the time."   ALL THE TIME!  That doesn't sound too rare in remote villages of Africa.

Only recently did the World Health Organization recognize PVNS as an actual thing.  The W.H.O. still hasn't responded to my requests on where they stand on the statistic.  I've been attempting contact with them since 2013.

The most shocking revelation I have come across explains why this stuff is so rare.  IT HAS DIFFERENT NAMES!  And the doctors in the bigger cities that see these tumors consistently will acknowledge that it has different names. In fact there are medical students in the Netherlands insisting that PVNS is now called TGCT, Tenosynovial Giant Cell Tumour.   That could explain why it seems so rare, because if the name keeps changing of course it is going to sound rare.  I asked the students why the name change and their reply was "That's what the W.H.O. calls it."  Well the WHO only started recognizing PVNS, doesn't have an answer about statistics, and now that it knows about it changed its name?

I'm not sure if I give much credibility to anyone releasing information about this disease because they don't have any facts, or a common name for it.   All I know is that the statistic is wrong.

Different Instructions Post-op

I had the same surgery on November 2, 2016 as I did on June 12, 2013.  I assumed that my post-op instructions would be the same.  I was wrong.  They were completely different.  I wasn't sure if it was because of the entry points.  The November surgery had 2 incisions while the June surgery had 3.  I had 3 areas with PVNS that was removed in November.  Can't comment on June's as the surgeon was not very informative and only told me about one area that I had already known about.   Another immediate difference was that in June I was sent home with a drainage tube that was removed a day or 2 after the surgery.  November, no tube.  And a lot of bruising up and down my leg because there is nowhere for the blood to go.  I would rather have had the tube.  The next difference was shocking not only to myself but others who had similar instructions as my post-op in June.  To move and bend the knee and walk on it as soon as possible.  In November I was told not to put any pressure or attempt to bend for 2 weeks.  That was very difficult.  I cheated 10 days in and paid for it for the following 2 days after trying to walk and bend my right knee.  I felt that the recovery was better by not moving it but it was very challenging to maintain the straight leg, it was very uncomfortable.  Now it's over 3 weeks Post-Op and my entire right leg is in pain.  It's not as uncomfortable as the June surgery but still swollen and painful.  Lots of sharp pains in the knees and still a lot of bruising although that is finally getting better.  The swelling continues to go down with the assistance of ibuprophen along with ice and elevation.  I sleep with an ice bag and try not to take the pain medication if I can get through it.  I don't like taking so many medications.  So I stick to what I think is most beneficial.  I tried going to the gym this week.  2 days in and I was paying for riding the bicycle. So I'm sticking to a specialized yoga practice at home for now.  Might hold off on the gym for another week and try the swimming pool.  I'm still using a cane because it can get very painful very fast if I'm walking or standing around for too long.  I will probably use that for at least another week as well.   I do think overall the holding off on using the right leg is better in the long run.  I remember the pain being awful after my June 2013 surgery for a long time.  My hope is that I won't have to have another surgery again for either a long time or ever again.  I can only hope.

Seriously Preparing for Surgery

I knew I needed surgery, that was the easy part but my first obstacle was choosing the day.  Rather than having surgery within a few weeks, I chose to have surgery over 6 months after my last MRI.  I take the risk of having my PVNS continue to grow and potentially cause more damage.  Because I had so much time I could spend it preparing for my surgery. 

In April I started going to acupuncture regularly, at least twice a month.  They won't attach pins to the site where the PVNS is and they are very careful of that.  But just relaxing and focusing my energy on the chi flowing through my knee kept the pain tolerable. 

In May I met with a yoga instructor who developed a specific routine for me to do daily.  One that wouldn't take too much time and include moves that I can do the entire time.  When I practice yoga in a group I can't do many of the poses and end up laying down most of the time.  So I was happy to have a routine that I can do. 

In July I joined a gym.  It took a while to get into a routine, basically not until more recently.  First I tried going after I dropped my daughter off at school.  But that would eat into my day.  If the day got too late I would end up not going.  I came across a video of some army guys talking about getting up early and how much they felt they could accomplish by getting up at 4:30AM.  Ok, I'm not getting up at 4:30am but I started setting my alarm for 6am.  Then I changed it to 5:30am.  I try to go every day except Sundays but I still do my yoga.  Saturdays I don't usually go unless I go swimming which consists of me doing motions I can do in the pool, not really "swimming".  Or I go dancing, which isn't really dancing because I end up in pain if I go full on dance moves.  So I count that as "exercise".

In September I hired a health coach with an organic food line she offered to help me stay on track with eating right.  Ok so it's Halloween and I'm cheating just a little but as my coach says, "It's not about perfection, it's about progress."  If I eat any sugar now it's dark chocolate or honey.  If I do eat sugar it's maybe once a week.  Progress.  The food line consists of small portion instant meals that she told me to eat every few hours throughout the day.  It reminded me to eat more frequently rather than waiting until I was starving, only eating once or twice a day.  Being "too busy" to eat.  Then gorging out on as much food as I could.  I was living off coffee, carbs and sugar before the coach.

In October I joined a health challenge that was put on by a networking community that offers supplements.  I started taking the supplements and that is where I made the most progress. Immediately the feeling that I was morbidly obese went away.  I had usually felt that I was probably 300lbs but I weighed 168 which was the heaviest I've been since I was pregnant 19 years ago.  I was able to kick my horrible coffee addiction where I would start the day with 16oz of coffee. And if I didn't get the whole thing I wouldn't feel satisfied.  And I would keep drinking coffee throughout the day as well.  I have stayed on track by the competition factor.  I lost several inches off my waist and was able to get down 5lbs consistently.

My newest endeavor is transcendental meditation.  I again saw a video that talked about how people felt after 60 days of practice.  I will get curious about something that looks good for me, follow it, and let it help me keep improving.  I haven't developed a routine yet, and I will be able to focus on that next month while I recover from surgery which I have in 2 days.  I also feel this is a little like the slow movement. Where you practice doing everything slower.  I've been doing that ever since I was diagnosed in 2013.  It definitely keeps me calm in chaotic situations.

Last week the hospital called and asked if I would consider switching my surgery day to today.  Another patient needed to delay her surgery because her body mass index was too big.  I thought about all of the effort I have put into my surgery and know that I deserve the day I picked.  And although I felt for her situation I could not do that for her.  I have planned every day up to this moment.

I am ready for surgery.

Today, I Concede

It's easy to deny that I have something wrong with me.  That I'm actually fine and my condition is all in my head.  But as it progressively becomes worse it no longer gives me the concept to maintain that I am ok.  Shooting or stabbing pains in my knee are more often noticeable.  Doing any activity, even sitting, is strenuous.  I notice myself wincing or grunting when doing simple movements like getting into a car.  My tumors cause me more discomfort when descending.  Such as going down a flight of stairs or sitting in a chair.  There will be no squat thrusts for me.  The last surgery I had I was using a cane a few weeks before the procedure.  The PVNS became unbearable and I was severely limited on the use of my leg because I could no longer bend the knee very well at all.

I carry a cane in my car and have another at home just in case it gets to that point because I know full well that it will get there.  It could even happen before my next surgery.  I have 2 sets of crutches at home because I know I will need them after my surgery.  I also have a ramp built over my stairs to get into my house so that I don't have to deal with stairs.  I like stairs if I can use them but if it's a challenge I really do not enjoy trying to navigate stairs.  Being a real estate agent in a city can be challenging because most new structures being built have lots of stairs.  I'm not afraid of stairs.  I'm not afraid of losing mobility for several weeks after my surgery.  I have learned to become prepared for what PVNS puts me through because I have to.  I don't have a choice.  Even as I write this sharp pains are shooting through my foot and running through the back of my calf up to my knee joint.

I blame everything that happens with my right leg a direct result of the foreign stuff living in my right knee.  And it's not welcome there and it doesn't care.  That's where it lives now.  It's like the homeless guy that lives on the other side of my property line.  He is defiant and I have to live with him.  During the day he bangs on a bongo drum and he's not good at it.  My PVNS is just like that homeless drummer dude and his barking dog.  Annoying.  And there is nothing I can do about it but be patient until it gets handled.   And so I live with it.  I accept it.  I have pain.  Almost constantly.  I do not have full range of motion.  I do not.  (I deny that the most).  I can not swim, run, jump, bend, do most yoga poses, and worst of all I can't dance.  Dancing is my therapy and I can't do it the way I want.  My PVNS controls my dance moves and I hate it for that reason alone.  But I won't let it stop me from dancing anyways, pain and all. 

What I will say is this.  I can do many things and I am so very much thankful that I can.  I can still move.  I can still walk.  I can still use the stairs both going up and down which still amazes me.  I can still swim somewhat and dance somewhat and it's enough for both.  I can still drive, that's huge.  I can do anything I need to do right now and that is all that matters right now.

Surgery #2 Scheduled

I did it!  I scheduled my next surgery.  It's not for a few more months but it's scheduled.  I got a little panicked when a nurse at my regular doctors office mentioned that if I didn't get the date set it might not happen when I want it to, which is November.  So I called the surgeons office and scheduled it.   It wasn't that difficult.  I have no idea what I'm going to do about things I "normally" do.  Like drive my daughter to school, go to the grocery store, and simply being able to go where I want.  I picked November because the tumors are growing and making it harder.  If I wait too long it will cause more damage.  I'm not completely needing surgery, I could probably go for a while but I can't swim, I have a difficult time going long distances, and my knee locks up often.  The popping sound is unnerving.  It's not painful mostly but just inconvenient.  I have pain mostly in my right foot from trying to not use my right knee.   I'm looking forward to the surgery and am making sure to do a yoga practice daily that I had specially tailored just for me and my upcoming surgery.  I joined a gym and although I can't swim I can do other exercises in the pool which I prefer.  I probably won't go back to the gym for a few months after my surgery so I'm trying to get in good shape before then.  It's important for the recovery phase.

Americas Drug Epidemic Related to Surgery

If you are an American and you have PVNS, chances are you will cross paths with being prescribed Oxycontin before or after surgery.  And if you aren't already aware of America's addiction epidemic, the addiction usually begins when taking Oxycontin to battle pain management related to surgeries.  But there are alternatives.  If you already have an addictive personality, battle addiction of other forms, or have addicts in your family then you must take extra precautions not to get caught up in the addiction to Oxycontin, a form of heroin.  Just remember that the drugs they give you for pain are derivatives of heroin.  You are taking heroin.  Let that set in.  The American "drug war" is a sham.  The pharmaceutical companies are allowed to market to consumers not doctors and most doctors are rewarded financially for prescriptions given for the pharmaceutical companies to cash in.  So in essence, doctors are drug dealers.  Government supported drug dealers.  Yes they save lives, yes we need them, but there is no education around using heroin and the dangers of addiction.  If you do have issues with addiction and you are faced with using oxycontin, try contacting a naturopath and finding alternate methods such as acupuncture, yoga, and arnica.  There are plenty of alternates, don't fall for the blatant prescription without research and discussing the dangers with your doctor.  If the doctor prescribing does not make you comfortable with his explanation, even if it's dismissive as "it's no big deal", seek other opinions.  The last thing you need is to battle a heroin addiction along with your PVNS condition.

Jackpot! The PVNS info I've been waiting for?

This information was posted last year but I only recently came across this lengthy list of confusing yet enlightening details.  At least finally there is a different ratio of diagnosed cases.  It had been 1.8 in 1 million since the 80s.  This report claims it's 1-2 million cases per year.  That sounds more realistic from the numbers I have been tracking.

Another interesting revelation is that it was discovered in the 1800s not the 1940s which blows many of my environmental theories out of the water.

I have heard doctors refer to PVNS as different names such as Tenosynovial Giant Cell Tumor.  Depends on where these tumors reside apparently.  If it's in your knee then it's PVNS.  If it's in a finger then it's something else.   It can also be referred to as xanthomatosis, benign synovioma, and pigmented villonodular tenosynovitis. 

I'm excited to find the most extensively researched and well thought out discovery and give applause to those who put this information together.

http://www.orthopaedicsone.com/display/PORT/Tenosynovial+Giant+Cell+Tumor

Considering Amputation With PVNS

Personally I fantasize about cutting the offending leg off and replacing it with a cool blingy 3D printed prosthetic.  Doctors and loved ones frown and shake their heads at me.  But with all of the problems I have with my leg I would rather just get rid of it like a bad relationship and move on.  I've heard of the phantom pain but what if you never had pain before the amputation?  A woman recently discussed her amputation and what led her to making the decision.  She said after 28 surgeries and many not so great decisions by doctors she went through with amputation.  I'm only heading for surgery #2 and it's enough for me to want to cut it off.  But she mentioned the tale as repeated by other doctors that you could be indirectly spreading PVNS with amputation.  Ok possible.  But if you are in constant excruciating pain and discomfort it should be something to consider.  But research this option thoroughly before taking such a drastic step.

UPDATE:
A recent conversation with someone who has opted for amputation where she discussed how it is to use the washroom in the middle of the night when you have a limb missing.  She said she preferred the wheelchair to the crutches.  It didn't occur to me that you wouldn't sleep with your prosthetic intact and how challenging it would be to put on quickly if you really needed to go.  I realized I am no where near considering really having my leg amputated.  I feel for those who have had to choose that option.

KT (Kinetic Tape) Hooray!

I have come to the conclusion that I break out in shingles on the back of  the knee that has the PVNS whenever I wear something that I had worn when I had a previous case of shingles.  Shingles suck.

I had been wearing a pull up ace wrap when the inflammation caused too much pain.  I went out dancing and 2 days of anguish ensued.  I pulled out the trusty old wrap and pulled it up to swaddle my knee.  However, the very next day a very itchy rash appeared.  If you touch your first finger to your thumb, about that size.

With shingles there is no releif.  I can't put a bandaid over it.  So I found a new wrap and put a large piece of gauze smothered in anti-bacterial zinc ointment over it.  And then I went on vacation.  I wore long dresses to cover the unsightlyness of the bandage that now covered an area just below my knee.  Total bummer.

Then I took my daughter to a chiropractor who used Kinetic Tape on her sprained back.  I thought immediately this could be my fix so that I don't place things on the back of my knee because maybe it's the rubber in the wrap that caused the shingles.  Who knows?  Anything to avoid another occurrence of shingles is preferred. 

Once I learned about this new tape I've seen it everywhere.  Well maybe not everywhere but definitely in sporting goods stores.  So I bought myself a roll of it and keep it handy in case my knee gets those terrible sharp pains.   I haven't actually used it yet but I'm really excited about it.

Thank you to the inventor of this awesome tape.  You may have just saved me from another outbreak of those darn shingles.

I had an appointment to make another appiontment

Today I saw the open surgery doctor guy who confirmed again that he will not be the guy to cut me open next.   I was there for the MRI results that I have been anticipating for over a year.  The results:

1. MRI findings most compatible with pigmented villonodular synovitis of the right knee with a small erosion at the posterior aspect of the lateral femoral codyle.  Interval development of the new PVNS deposit at the superior aspect of Hoffa's fat pad since prior exam.
2.  Moderate knee joint effusion.
3. Chondromalacia patella.

After Dr. D read this to me he explained, "But don't worry about that." 
He also added that because none of the PVNS has broken through past the synovial lining that he wouldn't have to operate on me.  I said, "Good, I don't ever want to see you again.  At least not anytime soon."  He agreed.  But we looked at each other as though we knew this would not be the last encounter.

He kept saying, "Is there anything else I can do for you?",  emphasizing the "else".  I was wondering if he wanted me to ask for drugs or something.  I don't know.  What can he do?

He told me he would refer me to the team that does the kind of surgery I need. I was elated to be spending my time for an hour of my day to wait in a room to be told what I knew that I was going to hear.  "You need to see someone else, you will be called in a few days".    Oh yay.

Basically my prognosis boils down to having diffused PVNS in my right knee. It is still growing.  It is causing inflamation and the slow destruction of my knee.  And now I get to wait some more.  

I found a surgeon!

I finally got to see the surgeon today! 

After waiting for about 5 months to get through the insurance referral system I was there.  I felt as giddy as a freshman on their first day of college. 

The location of the doctors office was in close proximity to my home.  I like to see doctors as close to my home as possible but that's not always reasonable.  Besides, the University of Washington has the best medical program the city of Seattle has to offer.  Their office feels like a spa rather than another doctors office.  The staff was friendly.  And the visit went very quickly. 

UW is a teaching hospital so there is always a "team" of people around.  Each medical staff seems to be equipped with an assistant.  I was ok with that.  I was immediately given a referral for an MRI which I will have next month. 

Dr D said he only performs major surgeries and I only need a key-hole arthroscopy.  He has just the person to send me to.  And, he acknowledges that PVNS is far more prevalent than the silly 1.8 in 1 million outdated statistic. 

I've got my MRI scheduled for next month which is the next step.  Dr D said he does not do keyhole arthroscopy but he refers people "all of the time" to someone else on his team.  Only when you have PVNS do you get excited about surgery. 

Maybe I will get surgery this year

It's been 5 months since I started the process of getting surgery to remove the PVNS that is currently growing in my right knee. 

I found a new doctor right away when my family doctor retired in August.  I explained to the new doctor that I need him to refer me to an out of network doctor but I won't even know who unless I can magically pull one out of the sky.  He Googled one and found a guy who might be able to do the job.  He popped up first under "PVNS surgeon".  Only getting the referral through the authorization process of my insurance was like watching a cat play with a toy mouse.  I found going to the doctors office and talking to people in person was a great start.  I got results faster that way.  I was given the specific name and number to call the insurance person to explain why it is important that I get my referral authorized sooner than later.  But getting that woman to call me back has been futile.  I found it to be more effective to keep going back to the doctors office and telling the referral coordinator that I was going nowhere.  She got on top of it and sent the approved referral to the right doctor in December of 2015. 

I didn't hear anything and tried calling the primary doctors office but their automated phone system makes me want  to pull my hair out.  So I went back down to the doctors office and explained to the referral coordinator that I still hadn't heard anything.  She said to call the surgeons office direct and make an appointment because the referral had been sent. 

I called 3 weeks into January.  Guess what?  Well, besides the phone number she gave me not working, the surgeons office said they never got the referral.  I went back down to the primary doctors office and told the referral coordinator that I'm still stuck in referral limbo land.  She said she would take care of it.  I called the very next day to make my appointment,  they still didn't have the referral!  The surgeons office said that I should just keep calling back daily.  I seem to think work can get done within 2 days. 

I just got off the phone with the surgeons office and the 3rd person I have talked to there said that it can actually take up to 48 hours for the referral to be uploaded so I need to call back again tomorrow.

... Continued.  I waited 2 more days and called again.  The surgeons office said they see that the referral was sent to the wrong fax and it wasn't in their office.  I called my primary doctors office and told the referral coordinator that the last 2 fax numbers she tried were incorrect and provided her with the correct one. 

I seriously feel like I have to do other peoples jobs.  I'm trying to maintain being polite about it.